Bedridden and very severe with ME/CFS, now much better with pacing and Mestinon
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 12 years
- Last post
- Jan 2025
In their words
- Condition: ME/CFS
Had CFS 12 years.
In context ↗ - At worst: Very severe
I was very severe at first
In context ↗ - Now: Much better
I was very severe at first, then over the course of about 12 years improved to mild.
In context ↗
Read from 11 of their posts and comments; links to the 9 this page draws on
Summary
Plover 55897 was a marathon runner and spin instructor in their early 30s when fatigue and aching legs began, becoming bedridden and very severe. Over about 12 years they improved to mild with pacing, Mestinon, fixed sleep, clean diet, supplements and neural retraining, though exercise still causes a crash. They described one crash as the worst of their life, saying they would take real COVID any day, and a virus brought a mild crash in 2024.
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What they tried
What they credit
Also tried
Their words about each treatment
- Prozac · Helped
Prozac is one of maybe 100 things I have done
In context ↗ - pacing · Helped a lot
Once I started living within my energy budget and quit crashing, that budget slowly expanded.
In context ↗ - neural retraining · Helped
I believe I’m into the answer with neural retraining
In context ↗ - fixed sleep / sleep hygiene · Helped
Mainly with mestinon, pacing, fixed sleep, and slow build up of activities as tolerated
In context ↗ - slow build up of activities as tolerated · Helped
slow build up of activities as tolerated
In context ↗ - melatonin · Helped
shifting off any sleeping drugs to nothing but melatonin
In context ↗ - Calm magnesium powder drink · Helped
Calm magnesium powder drink before bed
In context ↗ - yoga Nidra on Insight Timer · Helped
what helped me a lot was the practice of yoga Nidra on Insight Timer
In context ↗ - eating clean—nothing packaged · Helped
I do best when I pace and eat clean—nothing packaged.
In context ↗ - positive mindset · Helped
eating healthy, supplementing, and positive mindset
In context ↗ - wild game / elk meat · Helped
eating elk meat or any wild game the next day I have so much more energy than usual
In context ↗ - COQ 10 · Helped
l-carnitine, COQ 10, Alpha lipoic acid, and branched-chain amino acids
In context ↗ - branched-chain amino acids specifically from Advocare called catalyst · Helped
branched-chain amino acids specifically from Advocare called catalyst
In context ↗ - sitting outside for 10 mins a day · Helped
Nothing beats pacing and sitting outside for 10 mins a day.
In context ↗
Approaches: POTS medication · SSRIs · Amino acids and carnitine · Brain retraining · Pacing · Physiotherapy and rehab · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. 1 step has no time and sits in story order between the steps around it. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | first symptoms while a marathon runner and spin instructorFatigue & achy legs were my first symptoms.In context ↗ | Mild | |
| — | very severe and bedriddenI was very severe at first ... Bedridden. | Very severe | |
| 2022-10-24 | reported a big change in their life from what helpedyou cannot believe the change in my lifeIn context ↗ | Not stated | |
| 2023-02-10 | nearly back to 100I’m nearly back to 100. Mainly with mestinon, pacing, fixed sleep, and slow build up of activities as toleratedIn context ↗ | Near normal | Mestinon / pyridostigmine |
| 2023-09-04 | energy budget expanded, almost a normal lifeOnce I started living within my energy budget and quit crashing, that budget slowly expanded.In context ↗ | Near normal | Pacing and the energy envelope |
| — | worst crash of my life after COVID vaccinationIt was the worst crash of my life. I would take the real Covid any day and I have!In context ↗ | Not stated | |
| 2024-09-28 | mild after 12 years, coming out of a mild crash from a virusI’m mild though coming out of a mild crash right now due to a virus.In context ↗ | Mild | Pacing and the energy envelope |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
if I exercise, I am for sure going to have a crash and not do anything the next day
In context ↗ - Pain & fibromyalgia
Fatigue & achy legs were my first symptoms.
In context ↗ - Sleep problems
it took 10 years of constantly working at getting better sleep
In context ↗
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